Tuesday, January 28, 2014

Hand me that blue sky piece, please. The blue one. The one that goes next to that blue one.

Forget the 100-piece puzzle, I'm going for the 1,000-piecer! I can't even believe things could possibly become any more complicated for our boy at this point, but...here we go! I anticipate 2014 being the ride of a lifetime. Lots of ups and downs, but I know many answers will come our way, as well. I KNOW we will be taken care of. I know Jesus has our boys in his loving arms, and us as well.

First of all, Elijah is off of the Valium, yay! And...Elijah is off of the Valium, boo! The good side is that his vestibular system appears to have readjusted since surgery and this is wonderful news. He is no longer dizzy or struggling with nausea, and he is not needing medication to control these things. The bad side is that the medication was REALLY helping out with his behavior. After a few days of being off it, things are back to "normal." :( He is back to screaming at us when we ask him to do something (anything) and lashing out at Sammy (uhh, everyone) when things don't go his way. He is back to using icky tones when he talks (pretty much constantly) and saying unkind things to all of us.

I took Elijah to see his primary doctor this morning. My main goal of the visit was to address some things we have been noticing since surgery. His body has been doing A LOT of motor tics, and occasional vocal tics, as well. He is constantly rolling his head in a figure eight pattern with his eyes looking straight up. Sometimes his hands simultaneously open and close. Throw in some arm flapping and body jerking. His eyes seem to get "stuck" sometimes and go up and down when he looks at certain lights. At random times he will blurt out a loud sound that seems to satisfy something inside of him. All of these things (minus the eye movements) are things he has done his whole life. He has just never done them quite so much or intensely before.

Dr. Judy wants Elijah to have an EEG done on his brain in hopes of ruling out any "electrical" issues. There is a chance that these tics are benign responses to stress (recent surgery/difficult recovery), but they could also be signs of a neurological disorder such as tourette's syndrome. Or possibly some sort of seizure disorder, which I don't feel in my gut is the issue. I laughed loudly when she told me that the EEG had to be done while E was sleep-deprived. Ha! He is always sleep-deprived! She said, "Yeah, but you might need to wake him up as early as 4am!" Trust me, he will be wide awake. You have nooo idea.

We will be doing the EEG at Children's this Thursday morning. Coincidentally, that afternoon is his appointment at the sleep clinic. Next Monday brings surgery follow-up with ENT, including a hearing test to confirm left-sided deafness. If we can figure out the financial side of things, the memory-learning-attention testing will begin next Wednesday. Dr. Judy suggested we also get him in to see his neurologist and opthalmologist with these new symptoms, so I'll schedule those appointments tomorrow. We also need to connect with an audiologist. Thanks to our very kind friends Amy and Mitch, we have a few incredible (the "best") recommendations for pediatric audiologists, which we are very thankful for. I have also scheduled an appointment for E to see a developmental pediatrician (appointment not till April, ugh), who will be able to address OCD, anxiety, ADD, or whatever the heck is going on with our boy. Which leads me to..

Dr. Judy told me today that it is a really good sign that Elijah's behavior improved while he was taking a low dose of Valium. This could mean that anxiety is at the root of his struggles (sleep, too, obviously...but which comes first? The chicken or the egg?). Not that we ever wish for him to struggle with anxiety, but this is something we can address. And it could be a very big piece of the puzzle. Since his appointment with the developmental ped is scheduled so far out, Dr. Judy, being the incredible doctor that she is, offered to call this doc and ask for Elijah to be moved up in the schedule. She also told me that she would give Dr. M a brief overview of E and get his thoughts on possibly starting an anti-anxiety med. Typically we wouldn't want to cloud his brain or alter him in any way during the investigative process, but he is obviously really struggling. It's a bit of a tricky situation.

Dr. Judy verbalized what Dan and I have felt for a long time now. There is something we're missing. Once we figure out X, everything else will fall into place. We just don't know what X is yet. And things feel really complicated and overwhelming right now. I am assuming Dr. L (ENT) will clear Elijah to go back to school next week, which means calls from the principal and bad reports from the teacher will be starting up again, adding to the craziness. :(

We continue to battle for our amazing boy! BOTH of our amazing boys! We love them both so much. We couldn't do any of this without a faith in God, you guys! I don't know how anyone gets through difficult times without Him. We appreciate your prayers so much. Thanks for reading!


Michele said...

Have you had him tested for Aspergers Syndrome? You probably have, but it would seem to fit him, since he's very bright, have difficult social relationships, has tics, OCD, etc. My niece and nephew both have it and Elijah seems very similar. No matter what it is you have an amazing family and you are in our prayers! You have all been through so much and deserve answers!!

Anonymous said...

While E is doing so many different tests, can you have the doctors keep him at home with continued home schooling from the district? If E does need medication, it would be better for you to see how E responds so you can talk to MD about adjustments. You will not see what is happening as it is happening while he is in school. Praying for all of you.

christine said...

I am hoping for a nice simple answer to all of this. You are such an astoundingly good person and Mom to Elijah. It will be interesting to find out the results of this mornings test. I guess they commonly use an EEG to diagnose sleep problems! So maybe this will provide an answer to that little mystery too. Let's hope for answers and peace for your family! STEADFAST!